Update from Colin

To say the last few years have been an emotional roller coaster would be the understatement of the century. The ups and downs, the back and forth... It has all been a process, and Heather has taken it in stride. About a week ago, we were told Heather has PTLD (transplant-related cancer) in her brain. We were transferred 3 miles across town to UPMC Shadyside. There, we were given her options for treatment. Everyone knows Heather is a complicated case, one that takes some of the best medical minds in the world to decipher. Together we discussed 3 different types of chemotherapy, and/or radiation. All have benefits and drawbacks. Chemo is tough on the heart and kidneys and leaves the body ripe for infection. The body can only take so much, and hers has been through the ringer. Radiation is a relatively painless process and much more targeted to a specific area, vs. chemo that travels throughout the blood stream. The decision was made to go forth with radiation. Radiation has its downsides.  It can leave you tired, run down, and there are concerns about long-term cognitive issues. Honestly, when it came down to it, it wasn't much of a decision.  Dr. Lieberman said Heather's body is not strong enough for chemotherapy.  In his words, "It might kill her."  The treatment plan is this: 10 treatments over two weeks, Monday through Friday, with the weekends off. As I write this we have 2 treatments in the books. I look into her eyes and see the woman I married behind them, knowing full well she can hear and she knows what I'm saying. It's just a battle for her to reply. I've said it before and will continue to say how much this girl impresses me. She is strong, caring, with spirit that won't quit and a heart of gold. Through all of this, she will prevail. Failure is not an option and neither of us know the meaning of the word quit. 

Thank you to everyone for all the support and prayers all of you are amazing.  

Wednesday June 14

Nothing new to report really.  Dr Cruz says not to worry about the spot on my brain.  They are still waiting on the results from the spinal tap.   

So basically I have no answers yet and it's frustrating.  Monday night I passed out.  Luckily Colin was holding on to me when it happened and was able to catch me before I fell.   Last night the same thing happened.  They are calling a cardiologist to see me to see if it's something to do with my heart.  They are also reviewing all of my meds to see if maybe it's medicine related.

I have just been hanging out in my room with Colin and waiting.   It's getting old but it's what we have to do.   

I'll post more later.   Have a good day!!   

Thursday June 8

I know it has been a long time since I've posted.   A lot had gone on since my last post.  I'm at a loss for words.

Long story short....the beginning of may I was in the hospital getting ready to be discharged.   All of a sudden I couldn't breathe.   I looked up and saw the aide.   I told him I can't breathe and that's all I remember.   The next few days were a complete blurr.   I was in the icu.    I remember holding Colin's hand and it happening again.  Everything in my body froze and I couldn't breathe.   I don't remember anything except for him telling me it would be ok.  He was squeezing my hand and rubbing it.  That's the last thing i remember.  

I woke up a day or two later.   They tried to explain to me what happened but I still don't understand.   Something about too much fluid around my heart.  No one can explain how or why.  They have explained it to me multiple times but I still can't comprehend what I'm being told.  Basically it is called flash pulmonary adema.  It's when your lungs fill up with fluid.   So I was basically drowning myself.   

I have been doing better.  My lungs are clear.  I have been feeling better.  Last week I started having issues with my head being heavy.   They did an MRI and found a spot.  They don't know what the spot is so they did a lumbar puncture yesterday to try and determine what it is.   It was not a very comfortable procedure but I did it.  We aren't going to get the results back until after the weekend of course.  I will post more when we learn more.   Sorry again for being mia.  

Sunday April 30

It's been a week since I've updated.  

Monday - We finally got to the hospital around midnight.  I got settled and ready for bed.  Colin was already there by the time I got there.  He was camped out in the chair next to my hospital bed.  Woke up Monday morning and waited for the docs to make their rounds.  Dr Gonoza was on call.  He basically said that my counts are starting to trend down and they are going to do some more blood work.  He said that it's going to take a few days.  He consulted transplant infectious disease for their input.  Basically we are waiting.  They are also going to consult a pulmonary doctor as well because of the pain I'm having when I breathe.  

Tuesday - we had a pretty sleepless night.  Colin was up most of the time with me as well.  Bill came in before 7 to check on me.  Everything looks good on my labs.  They are still waiting to see if any cultures will grow.  It takes a couple of days.  Bill left.  I showered and changed my clothes.   The docs made their rounds.  I was told the same thing pretty much.  We are waiting on the bloodwork.  Colin and I spent the day being lazy.  I am having a lot of pain.  I've been taking the meds around the clock between all the new antibiotics and pill changes.  In the afternoon the infectious disease doctor stopped in.  He examined me and went over the different meds with me.  They stopped a couple of times to see how I'm feeling and if it was helping at all.  They don't think it's the pneumonia causing the pain but can't be sure.  He wants to wait and see if the cultures grow.

Wednesday- woke up, got dressed, changed and ready for the day.  Bill came in bright and early.  He went over my labs.  I needed Magnesium and Potassium so he put the orders in for me.  He left and said they would be back to make their rounds.  Dr Gonoza came around and said we are in a holding pattern.  They want to wait for the rest of the bloodwork to come back and go from there.  Colin and I watched tv most of the afternoon and then played cards.  We try to keep busy.  Sometimes it's a lot harder than others.  He decided to make a trip back to Lancaster and go hunting since we are just waiting.  Turkey season starts on Saturday.   We have been doing nothing but arguing so it will be a good thing.  Mom has off work until Saturday so she's going to come to Pittsburgh and relieve Colin.  Colin got packed and left early.  Mom drove and was here in Pittsburgh a little before lunch.   She stopped and got Panera which was a nice treat.  We just watched tv and hung out the rest of the day.  We had leftovers for dinner.  We went to bed after dinner.  

Thursday - woke up, was up all night off and on with all the meds and ivs.  Mom kind of got to see why I don't sleep and i get so miserable.  On top of it all my bag leaked.  I hopped in the shower and cleaned myself up.  I put on a new bag.  I had breakfast and we went for a walk to keep moving.  I'm starting to have more pain.  They can't explain the source of it and are going back and forth on whether or not they should scope me.  They said they would let me know.  Once again it's a waiting game.

Friday - mom is still with me.  She has to leave today because she has to go back to work tomorrow.  The doctors made their rounds and told us basically the same thing.  We are waiting on the cultures.  Dr Gonoza said that he definitely wants to do the scope and that it will be Monday morning.  He said he thinks it's necessary.  He also said he would consult with dr Lopez to make sure everyone is on the same page.  Dr Lopez was in agreement so I'm getting the procedure on Monday.  I called Colin and told him,  mom left after lunch to head back to Lancaster.  They left me here in Pittsburgh.  They might as well do their thing because I'm in the best place I can be.  After mom left I just watched tv.  I of course got hooked on say yes to

the dress.  My favorite!!  I had my dinner and went to bed.  I'm still having a lot of pain.  They are giving me meds around the clock.  Hoping it's a better night tonight and I can get some cat naps in at least.  

Saturday -

Nothing new to report.  I was up all night in pain.  It's getting worse from the neupogen shots.  My bones and joints ache.  Dr Lopez made his rounds and said to prepare for the scope.  He said they are definitely doing it on Monday.  I am in so much pain that I spent the day in bed.  I have to relax and hopefully work through this pain.  I watched tv all day.  I spent the day in bed.  I got up and walked to the nurses station a couple of times.  It was an uneventful day.  Colin called and checked in with me a couple of times.  I keep telling him everything is good and to have fun.  He sent me a picture of a turkey that he and Daryl shot.  He is a pretty big bird.  Im really happy they got one.  I hope he gets another one.  I had a bag explosion again and had to clean myself up.  This whole bag situation sucks.  I cleaned it up, showered again and went to bed.

Sunday - woke up early when they did my blood work.  I was able to get about a four hour stretch of sleep in last night so that felt really good.  Dr Lopez made the rounds this morning.  He said to take it easy today and not over do it.  He is still waiting on results from all the bloodwork and the neupogen shot reactions.  He said he will see me tomorrow.  I called Colin and told him what the plan is.   We don't know a time yet but they said they hope it's first thing in the morning but they can't make any promises.  I'm just going to take it easy today.  Mom is going to drive out after work so she can be here for the procedure so I'm not alone.  She will get here around 10 or so tonight.  They just brought my lunch tray so I'm going to eat now.  I'll try to post after my procedure depending on how i feel.  Have a good day!!  Keep me in your prayers tomorrow!!

Friday April 21

I've been in the hospital at LGH since before Easter.  We have been in a holding pattern basically to see what the next step is.  

Around lunch the nurse took my vitals and I had a slight fever 100.7.   She came back about a half hour

Later and it spiked up to 102.4.  We called the transplant coordinator and they said I needed to go

back to Pittsburgh.  They were transporting me that evening.  We got news around 7pm that they didn't have any available beds and that we would have to wait until tomorrow.  

Well...today is Friday.  I waited all day for news on being transported.  Mom came in in the morning and hung out with me and we had lunch.  She stayed for a couple of hours to keep me company.  She left around 2 or so.  She had to go home and get ready for work.  After she left we finally got news that they had a bed available.  They just needed to coordinate transport.  They said it could take a few hours/. I waited a while:  Around 4:30 the nurse came in and said that they called and should be here around 7:30.  I ate my dinner (chicken parm w/penne pasta) and got all my things organized and packed up.  Colin had taken the majority of it home with him yesterday to be ahead of the game so I didn't have much to do.  At 7:30 the nurse gave me my meds.  The ambulance still wasn't here yet:  I watched tv for a little bit and a little after 8 the emt came to my room.  They put me on a stretcher and off we went.  We just left and he said it would take a little over 4 hours to get there.  I'm in the ambulance and headed to Pittsburgh.  Wish me safe travels and good luck!!!  

  

Monday April 17

I was discharged from Pittsburgh on Wednesday.   They gave me a couple of iv supplements and we were discharged around 3.  We made it back home to Lancaster in about 4 hours.  I was not having a good day.  I cried most of the drive home and cried when we got home.  I'm not even sure I know why I was crying. I was just an emotional wreck.   Colin was finally able to calm me down and I went to bed.

I woke up Thursday morning and was feeling exhausted and had little energy.  I hung around the house and spent the majority of the day in bed.  The traveling on Wednesday and the emotions got the best of me.  I went to my parents in the afternoon,  I took a nap and watched tv and hung out.  I was supposed to go with shawn and Courtney to their tasting for the wedding but couldn't make it because I had to wait on the home nurse to come do bloodwork.   She was supposed to be there at 4:30 but didn't get there until close to 7.  There was apparently an accident on the highway and she was stuck in traffic.   She came and did my labs and evaluated me.  She didn't leave til close to 8.  After she left shawn and Courtney brought me some leftovers from their tasting and she brought

over the cake samples too from the her appointment with the cake lady.  The food was really good and the cake was amazing!   After we hung out and snacked Courtney took me back home.   I put on my pjs and went straight to bed.  

I woke up Friday and was really exhausted.  More so than I was on Thursday.  I took my meds and layed in bed.   Around lunch I really started feeling bad.  I took my temp and it was 101.3.  We callled the coordinator and she sent us to the er.  We drove to LGH and they took us right back.  The doctors in the er were in constant contact with the Pittsburgh doctors.  They did some testing and it was determined that I have fungal pneumonia.  They were treating me for bacterial pneumonia.  I was admitted to the hospital.  They got me a room fairly quick and once I was settled and everything was in place Colin left and I relaxed (hahahaha) and went to bed.

Saturday was pretty uneventful.  Mom and Dad came to visit and were here bright and early.  Mom stayed most of the morning and dad picked her up around lunch.  Colin got to the hospital around 6am.  He hung out with me all day.  He went home around dinner.  Amber came to visit and brought me a milkshake!!!   It was delicious!!!   Brynn stopped in for a visit too.  It was a nice surprise.   That's one of the things that will be nice about being back in Lancaster.  I'm surrounded by my family and friends and if I need anything they are all so supportive and close by.  It can give Colin a little bit of a break.

Sunday - Happy Easter!!   I had a very uneventful Easter.  I had an egg sandwich for breakfast.  It's so different here.  You can't call and order a tray.  You have someone who comes to the room and gives you a few choices so there's really no variety at all.  Colin was here bright and early.  He sat with me in the morning and we watched tv and took a couple of walks.  Cyndee came in before lunch and brought me my favorite jelly beans for Easter.  I was excited!  The two of them stayed for a couple of hours and then went home after lunch.  I had ham and mashed potatoes and green beans.  They also added an Easter surprise to the tray with a homemade peanut butter egg.  I ate half of it.  I took a nap in the afternoon because I was so exhausted.  The doctors made their rounds and basically said they aren't changing anything right now. They want to see how I respond to the meds and the regimen they have me on.  They are keeping me for observation.  Dinner came around 4.  It was terrible.  It was some sort of Salisbury steak.  I couldn't eat it.  I called Colin and he and Cyndee brought me a kids meal and frosty from Wendy's.  I ate dinner and they left to go grab something to eat.  I layed down and watched the naked and afraid marathon that was on discovery.  I got all caught up.  As far as how I'm feeling-  I feel good for the most part.  I have a lot of chest pain from the pneumonia.  They are managing the pain but not enough that I could go home.  I went to bed for the night.

Monday - Colin came in around 6 this morning.  He stayed and hung out until 9 or so.  My mom came in to visit.  She stayed until after lunch.  I spent the morning in pain.  I did two laps around the nurses station to keep moving.  I still haven't seen the doctor yet and it's close to 3.  Not sure why it takes them so long.  Mom left around 2 so I'm here by myself but I'm going to try and take a nap since all my meds are caught up and I'm on my own.  Hopefully I can catch a little sleep.  I will try to post an update when I get one.   Have a good evening! 

Tuesday April 11

A lot has been going on the past week and I'm sorry for not keeping up with my blog.  Here's the latest and greatest.....

Last Saturday we officially moved back to Lancaster.  Brooke, David, Max, Gray, Libby, Quinn, Phenix and Ireland all came to help us move.  They had the truck loaded and ready to go in about an hour.  They left the bed so that I would have somewhere to sleep.  Quinn and Phenix went to their hotel to check in and get ready for dinner.  We had no food so we made plans to go to dinner as a family.  We ended up at a hibachi restaurant.   It was a lot of fun being able to spend time together.  We don't get the opportunity very often.  Ireland is the cutest little girl ever.   The fire and flames didn't bother her at all.  After dinner we stopped at Pages and got ice cream.   

We all headed back to the apartment and the kids, Quinn and Colin played bean boozled.   It's the jelly belly game where you spin and land on a color.  You have to pick a jelly bean of that color and you either get a good flavor like pear or a horrible one like vomit.   You aren't allowed to spit it out or throw it up or you lose.   It's fun to watch the reactions on people's faces.   After they were done Quinn and Phenix left and we all went to bed.  

Sunday morning we woke up bright and early.  We went to Eat N Park for breakfast.  We went back to the apartment and loaded the bed and all the rest of the stuff onto the moving truck.  Once everything was out of the apartment we cleaned.  Brooke was a cleaning machine.  Her and Colin had the apartment spic and span in no time at all.  We loaded up the cars and our little convoy left.  I rode with Brooke in the mini van and Colin took Grayson with him.  The ride home was uneventful.  It's a boring drive but Brooke and I talked the whole way.  We stopped at a rest stop once and grabbed Burger King for lunch.  We ate our lunch in the car.  

We made it home in under four hours.  When we got there, they started unloading the truck and I layed on the couch with Libby and watched a movie.  Colin had organized and unloaded everything with the help of his friends who are the best!!   We couldn't have done it without them!!!   They helped unload everything and hang the tvs and re-arranged furniture.  It was a lot of hard work.  They made our lives so much easier.  Thank you guys!!!

Colin dropped me off at my mom's and I stayed there for the night.  It was overwhelming and Colin didn't want me stressing.  I spent three nights at my Parents.  I went home and started to slowly tackle my clothing and put stuff away and organize it.  

I didn't do much during the week.  I was too exhausted.  It was a pretty quiet week.   On Saturday I started getting chest pains that feel like side stitches.  Colin was camping and I was home with Cyndee.  I let her know what was going on and she kept checking on me.  The pains were becoming more frequent.  Sunday morning my parents came and picked me up and took me to breakfast.  After breakfast they dropped me off at home.  I layed down and took a nap.  I woke up and ate lunch.  I started to feel flush so I took my temperature and had a low grade fever.  I called my parents and packed a bag in case I needed it.  My mom came and picked me up.  The twins were playing football at the rec center which was on our way home so we stopped and watched them play for a little bit.  Their team was really good.   I had fun watching them.  We left the game and when we got to the house I reclined on the couch and watched tv.  I took my temp again and it was going up.  I waited a little longer and took it again.  It spiked up to 102.2 so I called my transplant coordinator.  She sent me to the local emergency room LGH.  Colin picked me up and we were taken back immediately.  I gave them the rundown of my history and Dr. Cruz's number so that they could communicate about what to do.  They sent me for a CT scan.  The doctor came in about an hour after and said that I had pneumonia and an infection.  They tried getting blood out of my picc line but there was no blood return.  They looked at the placement and the wire was inverted in my neck and flipped.  They had to give me an iv peripherally to get the antibiotics running.  The doctor from LGH called and spoke to Dr. Cruz and they wanted me transported to Pittsburgh so that they could have a handle on things.  Next thing I know, the nurse comes in and tells me that they don't want to transport me in an ambulance because it will take too long and that I am being flown to Pittsburgh in a helicopter.  About a minute later I was being moved from my bed to a gurney and was being slid into a helicopter on the roof.  It was a crystal clear sky and the moon was full.  It was a gorgeous ride.  It took about three hours to get to Pittsburgh.  The helicopter medics took me to my room and I said goodbye and got settled.  Colin drove to Pittsburgh but he had to go home and pack bags for both of us so we had something to change into since we can't just run back to the apartment.  He got to the hospital around 4.  

The doctors made their rounds in the morning.  They put me on three antibiotics and scheduled me for a picc line exchange in case there is infection in the line.  Everything else looks good with the exception of the pneumonia and the fever.  About an hour after they made their rounds I was taken downstairs to get the picc exchange.  They had to move it from my right arm to my left.  It was a quick and painless procedure.  

Today the doctors made their rounds.  All my labs are

good.  I am low on potassium so they are giving it to me in an iv.  They are going to talk to the oncologist about rescheduling my PET scan and procedure because of the pneumonia.  They are afraid to get a false reading if the pneumonia isn't gone yet.  We should know more tomorrow hopefully. I haven't had a fever since yesterday around 6pm.  I still have chest pain but it's the pneumonia.  The doctors are saying that as long as I don't have a fever today I can possibly be discharged tomorrow.  Praying for no fever and to get some of my strength back.  That would be awesome!!  I will update when I have more info.   Have a good day!!